new diagnosis !

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new diagnosis !

by Nonie13 on Tue Jan 23, 2018 07:41 PM

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Hello,

My husband and I just found out on 1-12-18 that he has cancer. the tumor is showing in the liver.  But not sure if it is coming from somewhere else and has metastasised there.  Having a PET scan Friday.  My brain is in over load right now. Glad I found a place to talk about things.  We are in the diagnosis state right now.  Waiting is brutal.  Any advise?  thank you

RE: new diagnosis !

by denver88 on Thu Jan 25, 2018 03:45 PM

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On Jan 23, 2018 7:41 PM Nonie13 wrote:

Hello,

My husband and I just found out on 1-12-18 that he has cancer. the tumor is showing in the liver.  But not sure if it is coming from somewhere else and has metastasised there.  Having a PET scan Friday.  My brain is in over load right now. Glad I found a place to talk about things.  We are in the diagnosis state right now.  Waiting is brutal.  Any advise?  thank you

Greetings.  I was diagnosed with pancreatic cancer that spread to the liver.  It was a neuroendocrine tumor.  I had a Whipple operation to remove tumor from pancreas and a few spots on liver but tumors remain in liver.  I now receive monthly injections, began in March 2017, and the tumors have stablized in liver, no other chemotherapy, scan every 4-6 months.  Pacreatic tumors not showing at this time.  So, that is my situation and be very careful before jumping to conclusions about your situation.  Await scan results to determine type of tumor that will guide all future actions.  Like you I went into overload and then proceded to be an Internet doctor of my own.  There is much good information on the Internet and then very dated findings (science has moved on since much on the Internet, this is 2018 and too much out there from nearly a decade or more ago) and conclusions/advice reached in a general form that turn out to be less than accurate or helpful.  I am still researching and questioning but in the end one must converse with their oncologist and trust (but questioning/research is fine for further discussion).  The PET scan will fill in most questions and define treatment so after that is completed you will have a foundation to go forward, ask questions, research, and get a treatment plan.  Waiting is brutal and speculation equal but wait for PET scan results to get a real focus on future and treatment.  Any questions just ask the folks on this site, they are helpful and have real life experiences.  Take care and keep in contact.

RE: new diagnosis !

by Nonie13 on Thu Jan 25, 2018 05:45 PM

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Thank you so much Denver88. 

RE: new diagnosis !

by ToddlerFather on Thu Jan 25, 2018 05:51 PM

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On Jan 23, 2018 7:41 PM Nonie13 wrote:

Hello,

My husband and I just found out on 1-12-18 that he has cancer. the tumor is showing in the liver.  But not sure if it is coming from somewhere else and has metastasised there.  Having a PET scan Friday.  My brain is in over load right now. Glad I found a place to talk about things.  We are in the diagnosis state right now.  Waiting is brutal.  Any advise?  thank you

- Beware of Dr. Google. Some information might be of low quality, some might be right but not apply to him.

- Do not consult only with endo; while it's helpful to also see an endo to discuss tumor damages, also get an oncologist in the multidisciplinary team to get him the best treatment. 

- Don't try hiding fear, pain and grief under the carpet. Live them so you both can move thru the coping phases as soon as feasible, in order to be ready for battle. 

- Depending on PET/CT results, be ready for more specific CTs and MRIs. 

- Getting information about which genomic/molecular testing would be applicable, and when such information would worth pursuing

RE: new diagnosis !

by barjaffe on Tue Feb 13, 2018 08:52 PM

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On Jan 23, 2018 7:41 PM Nonie13 wrote:

Hello,

My husband and I just found out on 1-12-18 that he has cancer. the tumor is showing in the liver.  But not sure if it is coming from somewhere else and has metastasised there.  Having a PET scan Friday.  My brain is in over load right now. Glad I found a place to talk about things.  We are in the diagnosis state right now.  Waiting is brutal.  Any advise?  thank you

I am the author of My Notebook: A Notebook guide for Newly Diagnosed Cancer Patients.  It is free, on a website,www.cancerinformation4u.org.  Also on the same site are 6 videos for recently diagnosed cancer patients.  As an advocate for newly diagnosed cancer patients and the people who love them, I have talked to many people in your same situation.  In fact, I have a sort of dialogue I wrote about meeting with them.  Here it is:

THE CANCER “JOURNEY” – THE FIRST DAYS AND WEEKS AFTER BEING DIAGNOSED 

Day 1 – Today, I was told by a doctor that I have cancer.  <<Typically, once you have been given this devastating and frightening news, you end up leaving the office with little or no information.>>   I couldn’t even think straight enough to know what questions I should have asked. 

Day 2 – I call the doctor’s office back and say what should I do now?  <<Typically, the doctor says the next step is to make an appointment with an oncologist with the appropriate specialty to treat your type of cancer.  The doctor may suggest a specialist for you to see, hopefully one who takes your insurance.>>   So I try to make the first available appointment.  <<Often you will be told the first appointment is days or weeks away.>>   What am I supposed to do in the meantime, while I wait for the appointment?  I am wondering when to tell each member of my family and close friends.  Do I tell them now, or wait?  Which one(s) do I tell first?  Should I just go to work and pretend nothing is going on, or should I tell my boss and/or co-workers? <<Whom you tell and when is uniquely personal.  You will probably want to tell the person(s) who is/are very close to you.  And you should.  But warn them that you won’t know the details of how bad the cancer is, for several more weeks.>>   

Days 3-21 – I have learned that I will have to take several more tests before anyone can give me any answers about how bad the cancer is and what my chances are, whether I am going to live or die, what treatments they want me to get, and where to get them or how long am I going to be in treatment.  Should I be doing something while I wait for all this to happen?  <<Often, during this time you wish you hadn’t shared this news with anyone, because now everybody is in a huge flap. So, here is what you ought to do: Give them all jobs to help you. Here are some things you, your friends and family can do while you wait for your tests and test results.   

  1. You know at this point at least what type of cancer you have.  Ask the people you’ve told to help you find out all the doctors’ offices and cancer clinics and hospitals in your area that treat that type of cancer. Make lists and consolidate them. Why? Because you will be referred to someone to do the initial tests, but that doesn’t mean that you will want that doctor or doctors to take over your care. You have choices to make.

  2. Find out where you stand on insurance, for all possible needs: Do they cover second opinions? Exploratory and reconstructive surgery? Experimental therapies (clinical trials)? Complementary therapies like acupuncture or massage? Physical and occupational therapies? Post-operative and post-treatment home health care? Rehabilitation? Medically-prescribed dental care?

  3. If your insurance has arrangements with only certain local hospitals, cancer centers, labs, and doctors, find out which ones participate in your insurance coverage.

  4. Make appointments with your dentist if you haven’t seen one for some time. Chemo and some radiation treatments may cure your cancer, but they can be murder on your mouth. Start with a clean bill of health.>>

Week 3-6 -- I have gone in for all the tests they wanted me to have.  Now I have an appointment to go in and see the doctor to learn what the tests have shown. <<Write down every question you can think of on a paper to take with you. Take someone else with you to be a second set of ears. Consider asking the doctor if you can record the conversation. Most doctors are willing but like to be asked. That way, when you go back home to your family and friends, they can hear first- hand what was said.>>     

RE: new diagnosis !

by denver88 on Tue Feb 13, 2018 11:47 PM

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please, those soliciting anything should stay off this site, those trying to drive traffic to their sites should stay off this site, comment on this site, offer your advice and experiences but to those trying to promote themself stay off this site

RE: new diagnosis !

by denver88 on Wed Feb 14, 2018 03:12 AM

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Do you wish to share how the PET scan turned out?  Details are so important in discussions on this forum so when we on here share our experiences remember the details make all the difference.  I was diagnosed with a neuroendocrine tumor of the pancreas that spread to the liver: december 2016.  I had a Whipple operation in Feb 2017, to date no trace in pancreas, still small tumors in liver but science has provided me with high hope as treatment can be highly effective for a long time and to date tumors have shrunk, I'll recovered from operation, only minor changes in life style and eating habits, have my energy back, weight mostly regained, and receive monthly injections to contain cancer.  So hope the best for both of you and there is proven hope in science so go forward, get the best advice and second opinions, and know that tomorrow brings better treatment to all of us.

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